Young-onset dementia

People diagnosed before age 65 present unique care challenges

Fewer Canadians are diagnosed with dementia before age 65 than as seniors — but their needs can be just as great.

Young-onset dementia is diagnosed before age 65 and tends to be unique in many ways. Early-onset forms of adult neurodegenerative conditions such as Alzheimer’s, vascular and frontotemporal dementia are some of the most common causes of dementia in those younger than 65.Reference1Reference2 At the time of diagnosis, people with young-onset dementia may still be working, taking care of their children and parents, and meeting financial commitments (mortgages, loans, etc.). Of all Canadians with dementia, the proportion younger than 65 is approximately 3%. Among the 2,481 patients younger than 65 hospitalized with dementia, 54% were male.

People with young-onset dementia tend to stay longer in hospital, and a higher proportion of them have extremely long hospital stays. This may be due to difficulties in finding age-appropriate services for younger patients. In addition, people with young-onset dementia tend to be physically fit, so finding appropriate home supports may take time.Reference3

While living at home with home care, more people with young-onset dementia experience severe cognitive impairment than their senior counterparts. Cognitive impairment can lead to potential employment difficulties that increase the burden for those already subject to competing caregiving and financial responsibilities.Reference4 There are various interventions and models of care specifically for people with young-onset dementia and their caregivers; however, there is limited evidence on the development and efficacy of those targeted services.Reference5

How is dementia care different for people with young-onset dementia?

In hospitals

More about hospital care  

At home with home care

More about home care  

In long-term care

More about long-term care  

In hospitals

Almost 2,500 Canadians younger than 65 living with dementia had more than 4,500 hospital admissions in 2015–2016. This represents 3.1% of all hospital admissions for people living with dementia.

At home with home care

More than 2,500 Canadians younger than 65 living with dementia received home care in the community. That was 3.3% of all people living with dementia who received home care in Newfoundland and Labrador, Ontario, Alberta, B.C. and Yukon.

In long-term care

Almost 4,000 Canadians younger than 65 living with dementia were residents in long-term care or nursing homes. They represented 3.2% of all residents with dementia in Newfoundland and Labrador, Ontario, Saskatchewan, Alberta, B.C. and Yukon.